Turn Up The Volume! 2 London 26th May 2017 – A Reflection on the event

Summary:

Two years ago, Steve Turner, Managing Director of Care Right Now CIC, launched the first Turn Up The Volume! Conference in Bristol inviting patients, carers, NHS and social care staff to come together for the first time to discuss the problems within the NHS.

‘It was billed as a patient safety event like no other,’ said Mr Turner, ‘and it certainly lived up to its promise. There were many emotional moments as people told their stories to a sympathetic audience. The aim was to share experiences in promoting patient safety as well as helping people to speak out safely about bad practice and bullying.’

Turn Up the Volume 2 aimed to take the conversation further, make more links and help bring about actions which make a difference.

This was a ‘bootstrap’ event, which was put together by people who care about the subject, many of whom gave up their own time to be involved. It was open to anyone with an interest in the subject.

Forty people attended the event, from all parts of the UK and beyond. Delegates were from a variety of backgrounds including health & care staff, patient and public whistleblowers and academics.

The event was organised with the support of Marianna Fotaki is Professor of Business Ethics at Warwick Business School, University of Warwick.

Feedback from the event, which is still coming in, is largely positive and all constructive. As a result resources are being added to the event web pages, and an action plan is being developed. This will be openly shared with all delegates and through the www.tutv.org.uk web pages and on twitter under the hashtag #tutvlondon .

Aims of the event:

To provide a safe space where all involved can listen and learn from each other.

Giving food for thought and ongoing reflection.

Providing an interactive and inclusive listening exercise, where we plan to help everyone use the experiences of all those affected by cultures of fear to drive forward real change.

Throughout the day emphasis was placed on be on transforming ideas into action, and moving beyond stereotypes.

Speakers and delegates:

The morning session was chaired by Colin Leys, emeritus professor of political studies at Queen’s University, Kingston, Canada, and an honorary research professor at Goldsmiths, University of London. He is co-chair of the executive management team of the Centre for Health and the Public Interest (CHPI).

In the morning we heard from Dr Alexis Bushnell, who is a Research Fellow on an ESRC Transformative Grant, examining post-disclosure survival strategies by organisational whistleblowers (with Dr. Kate Kenny and Professor Marianna Fotaki). Then from Tracy Boylin, Human Resource professional and whistleblower, who spoke on ‘How can we use this event to make a difference?, and outlined some of the NHS initiatives that are underway.

Following this we heard from inspirational nurse Joan Pons Laplana, who spoke on Whistleblower experience and survival. Joan tweets as @RoaringNurse and has 27.5K followers. He spoke of the support he needed to keep going and in particular how he was welcomed into the BME community and found support there.

This was preceded by a short outline by Steve Turner of what happened when concerns were listened to. He gave an example of a project which came about because concerns were raised and, thanks to an open leadership approach, resulted in long term (and measurable) patient safety improvements.

There followed an interesting and powerful discussion on the current culture, where many of the delegates expressed their concerns that it remains unsafe to speak out at the moment. This included reservations and serious concerns about the effect of the Freedom to Speak Up Guardian initiative.

The final talk for the morning was given by a current whistleblower, who wishes to remain anonymous, who outlined their current situation and the background to it. This was a disturbing story which paints a picture familiar to many whistleblowers, where patient safety concerns are turned into an employment issue and the focus is distorted in a complex web of bureaucracy, obfuscation and accusations.

The afternoon session was chaired by Fergus Walsh, BBC Medical Correspondent. Our guest speaker was Steve Bolsin, the man who blew the whistle on failings in paediatric heart surgery at Bristol Royal Infirmary. This led to the Kennedy inquiry, which vindicated his concerns and was a landmark in clinical governance. He subsequently found it impossible to find another position in the UK and moved to Australia, where he became director of critical care services at Geelong Hospital in Victoria, achieving world class outcomes with the adult cardiac anaesthetic service he started. He has honorary professorial positions at Monash and Melbourne Universities.

Steve gave an account of the events in Bristol which even today, nearly 30 years later, was a poignant reminder of what happens when people try to speak up and blow the whistle and a club culture closes ranks to protect themselves and their organisations. This led to a powerful group discussion and questions to and from the panel, and highlighted ongoing concerns.

The event concluded with a session on action planning, collecting ideas and keeping up the momentum.

Dr Steve Bolsin speaking at TUTV! 2 London

Next steps:

One of the main areas of feedback is that these type of events enable people to get together who normally never meet, and that the strength of this networking, and the non-hierarchical approach adopted, will help in delivering a just culture in health & care.

Specific actions proposed included:

Building links with academic institutions and existing research projects

Linking with the BME community and leaders, who suffer disproportionately as whistleblowers and were under represented at the London conference.

Building links with whistleblowing organisations

Setting up action learning projects e.g:

To find out more about all costs of victimisation of whistleblowers, (legal fees, settlement agreements, ‘garden leave’ etc…).

Looking at the effect on relatives of whistleblowers

Looking at whistleblowing in remote and rural areas

Introducing more visual displays such as one shown at the event the ‘cost of bullying in the NHS’ and using the hashtag #tutvlondon

Cost of bullying in the NHS display (figures for 7 hours) based on ACAS figures and the NHS staff survey

Promoting the Turn Up the Volume! model of engagement in England and beyond

Organiser’s comments:

‘The Turn Up event went well. I believe that together we moved things on a little. The event linked together more great people and academic institutions, and came up with some actions.

My aspiration for the movement is to demonstrate how (or if) this approach to ‘engagement’ events works. The main characteristics being that it’s open to all, non-hierarchical and aims to look at things from all angles.

My personal goal is to be able to return to the clinical work I nearly lost when I tried to raise concerns and was bullied. I was very lucky due to my unusual career, and my experience of both clinical work, troubleshooting and senor management. Many people aren’t so lucky and their continued exclusion is great loss to the NHS and Social Care. Not to mention the personal suffering and the failures to keep patients safe, which is why all genuine whistleblowers put their heads over the parapet in the first place.’

Resources:

Updates will be posted on the www.tutv.org.uk pages over the next few weeks.

We want the best health care system in the world, & the most efficient and effective system …

We have an opportunity to do things differently in Cornwall

How do we achieve this?

The challenges in Cornwall

There’s a huge amount going on with health and social care in Cornwall. Including the Sustainability and Transformation Plan [STP]; exposure of abuse and neglect in care homes; concerns over hospital closures, delayed discharges taking up hospital beds, and devolution of services on the way.

Although I have worked in health and care for over 30 years, I struggle to keep up with the issues and understand how services are organised. This isn’t helped by the current polarisation of views.

On the one hand we have a big dose of NHS and Council ‘spin’, excessive bureaucracy and even bullying. On the other hand we have public concern, often expressed around specific issues, and sometimes based on unfounded rumours.

Neither of these positions are helpful, and neither represent the vast majority of people (public, staff and patients) who just want good services delivered by kind people who are open, accountable and transparent.

#devocornwall

We have a great opportunity now with the devolution of health and care services. This will be realised if we all build bridges, and transcend the usual hierarchical boundaries. We all need to listen and learn. Everyone, to coin an overused phrase, needs to step out of their comfort zones.

Why we need to think differently?

Several community hospitals are under threat of closure, leading to anger and dominating the headlines. Less attention is given to identifying and measuring the benefits, and any disadvantages of community hospitals. For example, can they be staffed adequately, bearing in mind this means Doctors, Nurses, Physiotherapists, Radiographers, Dieticians, Speech and Language Therapists, Social Workers etc.? Is home care a viable option for patients and carers? Are there any creative options such as bringing back the old style ‘convalescence’? Is rural isolation and lack of public transport the major issue?

It’s becoming increasingly difficult to book a timely GP consultation. This has led to several inaccurate scare stories in the press about ‘cuts’ to face to face GP contacts. This needs deep thought as there are times when easy access to a GP on the ‘phone, or on-line, may actually be a better option. Access to health information from Community Pharmacies or in NHS run clinics in shopping centres, or better health information and advice available locally, may be more effective approach. Leaving GPs free to spend more time with those who need their help and expertise most.

It’s now widely accepted that the NHS and Social Care is underfunded. Despite this there is still a great deal of duplication and waste in the system. How many times have you been asked to repeat information to Health Professionals which others already have? Do some services overlap, and are there gaps? Do different organisations link seamlessly with other organisations? Are all services accessible to all? Many people have important stories to tell on these areas of inefficiency.

Now’s the time to talk about this, find out what’s planned, and take action together. ‘Patient engagement’ key component of the STP and #devcornwall.

Patients and public need to take the lead on this. It’s not the NHS or Cornwall Council’s plan it’s ours.

Mr John Barrass never imagined he would become a campaigner until his mother became ill. Read his story, featured here in full.

‘CARE MEANS CARE , JUSTICE IN CARE .’

‘THE NURSING HOME SECTOR is in crisis it has been in crisis for the last 20 years.

No rights , No justice , for any of the frail , vulnerable, elderly, it needs a massive political debate of all colours to change it !.

Please have patience to read this DOCUMENT to the end.

Thank you.

John Malcolm Barrass.

29 th October 2015.

THIS DOCUMENT ‘ CARE MEANS CARE ‘ , ‘ JUSTICE IN CARE ‘ .

THIS INVESTIGATION AND THESE RECOMMENDATIONS OF MINE WOULD SEE THE BIGGEST CHANGES AND REFORM SINCE JOHN MAJOR CLOSED LONG TERM WARDS DOWN BACK IN 1989, 26 YEARS AGO !!

WILL YOU READ A HARD STORY TO TELL AN INNOCENT PRISONER , AND THE INVESTIGATION ,WITH RECOMMENDATIONS.
THANK YOUJOHN MALCOLM BARRASS 4 TH APRIL 2015 .

In this country , if you are old , frail , you are not only vulnerable , you are bottom of the pile , end of your life , so what ,it doesn’t matter.
We have had 20 years or more of appalling care to prove this, had documentaries made , appalling stories told !
Nothing has been done about this.

In the last 5 years 400 small nursing homes closing down, putting the frail elderly vulnerable in larger homes , without enough staff and qualified staff to deal with them , southern cross and many others that charities know about, prove this.

In the next 15 years there are going to be twice the amount of 85 year olds , and 3 times the 65 year olds picking up there pensions.

The system is in CRISIS now .

CQC Chief Inspector Andrea Sutcliffe told BBC Breakfast TV in Oct 2014 ” the standard of care homes in England is not good enough at the moment “.

CQC Chairman David Prior said at the start of the CQC annual accountability at the healthcare select meeting on 16 th Dec 2014 , the CQC are still not fit for purpose “we have not got where we want to be. “

The Parliamentary Healthcare Ombudsman , Dame Julie Mellor has been forced into raising the investigation figures using only the same staff by spending less time than before accessing the cases and more time investigating the cases , still spending less time than before, pushing the investigating figures up from 400 to 2000 .

When you are spending less time doing both what happens to the serious cases as before as my mother’s , and cases like the Titcombe babies case , and the Sam Morrish boy’s case down here in Devon.

But what purpose are the Ombudsman there for they are not there to investigate nursing homes , they are there to investigate government depts. and the NHS hospitals.

The total cost to the taxpayer together is in excess of £400 million .

What are they getting for there money , an antiquated system , falling apart at the seams.

There are many many other revelations I could go on and on about .

That is why charities like the patients association , and many more are inundated with complaints that the Ombudsman are not looking into there cases properly .

Mr Barrass asks “when will this appalling treatment under the name CARE for the vulnerable ,elderly,frail ,in nursing homes in this country end ” .

The answer he believes after investigating the system for 5 years is in this document below. On the 26th May 2005 my mother suffered in the medical terms a dense right sided hemiparesis total anterior circulation, stroke left her aphasic , with a dense right hemiplegia.

AN INNOCENT PRISONER.
THIS IS A HARD STORY TO TELL.
Imagine what it must be like to be paralysed on one side ,unable to talk or call out for help ,press a buzzer, eat or drink, unable to walk , then imagine being fed and watered via a tube, the only quality of life you have is to see and hear people.
You are told you need a stimulating environment and responsive therapy.
Instead you are placed in a nursing home which is unsuitable for your needs.

Denied a correct chair for your quality of life, you cannot get out of your room for 4 months, then given a standard transit wheelchair deemed to be unsafe, under the health and safety factor ( had to support mums head once for 2 hrs with my own hand whilst wheeling her around in this chair ) , had to use this chair for 8 months, then when given the correct chair, but not enough staff to get out you out of your room on a regular basis.

Imagine being left in a soiled bed for 1 to 3 hrs,(one time left for 1 hr 20 mins the staff preferred to have there tea break first) However your mouth is not swabbed regularly so you develop crusty lumps around your teeth and on your tongue , nearly die in the first month of care , due to a chest infection not dealt with properly and promptly, blood tests not done on time, and then develop the worst case of constipation a hospital Dr has seen in 9 years, because you were not given the correct bowel medication, care home Dr say your family are fixated on this.

ALL THIS HAPPENED IN A NORTH DEVON NURSING HOME ,DEEMED TO BE ONE OF THE BEST IN DEVON.
WHAT MUST ALL THE OTHERS BE LIKE?
ARE YOU SHOCKED AND APPALLED.

On 23 rd October during the early hours of the morning , my mum died in a North Devon Hospital.
The last 6 days of her life saw her experience great suffering beyond anything she had already endured in the 4 years leading up to this time and place

THESE ARE MY MUMS FINAL 6 DAYS.
Her feed tube needed changing ,could and should have been changed one month earlier. Due to this, complications set in .
( which involved a drug , flu vaccination, super public catheter ) .
Mum’s last 6 days not checked by a Doctor , no management on at the weekend, allowed to have a feed tube change on Monday, when clearly condition at weekend needed looking into.
After being administered a Flu Jab one afternoon by the evening she had mucus / saliva running from the corner of her mouth like a water tap switched on, this continued for 4 days, then subsided for 6 days.

Day one Saturday. However when swabbing mums mouth I noticed a massive / piece and amount of mucus / saliva heavy phlegm . Staff told us it was only phlegm and did not call a Doctor.

Day two Sunday. Mum has vomited brown liquid, staff said it looks like dried blood, they did not call a Doctor , nor the home management.

Day three Monday. Mum went into hospital to have her feed tube changed (endoscopy) . When she arrived back at the home, her tongue and lip were swollen followed later by difficulties with congestion (upper throat and chest) , still no Doctor called. A temperamental red suction machine has been left in mums room.

Day four Tuesday. Mum still has congestive problems with a swollen tongue and lip with bruising under her chin again no Doctor called. Arranged to see the nursing home Doctor tomorrow, on his regular Wednesday visit.

Day five Wednesday. I discovered mum had a tooth missing , which no one recorded or explained to us how where and when it happened , yet two nurses told us they noticed it missing? , I noticed a hospital suction machine left in mum’s room (serious issues arise from this discovery ) the nursing home Doctor who we asked to see the day before had disappeared before we got there? , told by staff he had ordered antibiotics for mum.
After this the emergency Doctor was called who immediately rang for an ambulance and oxygen for mum.
Mum arrived at the hospital 4 blood tests were taken.
One arrived within 30 mins , found she had a major infection, put her on antibiotics , she was transferred to the medical assessment unit, her breathing has eased a little.

Day six Thursday. I arrive to see mum it feels if she has been given up on, I am told she is very poorly. She has been taken off the antibiotics and saline drip . Her breathing and congestion has got worse. Why has she been left to die like this just 3 days after all she went through?
It is a shock and more than I can bear.

QUESTIONS ARE RISING FROM ALL OF MUM’S CARE AND LAST 6 DAYS!

1. The parliamentary ombudsman would not investigate this only access!
2.We have 20 questions and issues unanswered by the p ombudsman!
3.Find they had 9 limited powers to investigate!
4.The legality side, costs outweigh compensation for the elderly.
5.After 5 years investigating this , nowhere to go to get this looked into properly or fairly!
6.This raises serious questions for everyone!
7.If they cant look into mum’s case properly or fairly !
8.They cant look into anyone else’s properly or fairly!
9.How can this be right!

WHAT WE WANT ANSWERS TO ARE :-
Why did my mother go to have a feed tube change to keep her alive , to die 3days after!
Why was my mother put through all of this !
For what reason!
I simply ask the question WHY.

QUESTIONS I ASK DURING MY MOTHERS TREATMENT,AND MY 5 YEAR INVESTIGATING THE SYSTEM IN GREAT DETAIL ARE :-
1.Are the parliamentary Ombudsman fit for purpose to look into private nursing homes?
2.Are the CQC fit for purpose when they still do not look into individual cases in nursing homes?
3.Have nursing homes got enough staff and quality staff to take care of vulnerable patients who need 24 hour care?
4.Should patients like my mother ever have been put into these homes ?
5.Should there be special NHS units for 24 hour care patients with multiple health needs like my mums ?
6.What rights have the old , frail, and vulnerable got in private nursing homes?
7.Continuing health care funding for the very vulnerable paid by the tax payer to private nursing homes, yet have loopholes in the system not to be investigated thoroughly ?
8.Care means Care whether it is Private or NHS, when anything serious happens in nursing homes, and it involves the hospital NHS, both sides will not comment what the other side have done , yet are both caring for a patient, so the patient gets caught in the middle of all of this not getting clear answers to what has happened to them?
9.Equipment ie specialist equipment , profiling beds etc, no law to make the nursing homes provide , the CCG were set up to deal with this, but still problems with no law to provide?
10.Because of the system as it is ,when anyone finds anything out no one will talk after fear of legal action, there has to be a new system free from legal interference?
11.Because of continuing health care paid for 24 hr vulnerable patients, paid by the taxpayer, it is the Government NHS responsibility not the legal responsibility to investigate accountability and answers for the families of love ones who have been affected ?

MY RECOMMENDATIONS!

1.A big political debate about all my investigation raises!
2. The PASC should hold meetings only about the nursing home sector and nothing else ,so they know more and can scrutinise more!
3.The CQC and the parliamentary Ombudsman are not fit for purpose anymore to inspect , regulate , and investigate nursing homes and a new one body only needs to be set up , with more powers to regulate , inspect ,investigate nursing homes doing the job together, to investigate all individual cases , to get accountability , free from legal interference .
4.Because the system as it stands at the moment , no one will ever get justice.

No one under the word ‘Care’ should ever have to go through this .

Don’t let this happen to anyone’s mother again.

When independent consultant nurse Lynne Phair said in the Panorama Documentary ‘Behind closed doors ‘ on 30th April 2014 ” To pull out a vulnerable patients buzzer is to cut there lifeline , and to imprison them “.
That must be what happened to my mum , she was imprisoned for a crime she did not commit.
I believe these deplorable events must be brought to the public’s attention to prevent similar things happening again, after all , anyone of us who cannot talk , shout out for help without enough staff and quality staff to look after us must be in prison too.

Thanking you all for taking the time to read this,It is desperately important this gets out to the public.
Anything you can do to help will be appreciated .
Yours SincerelyJohn Malcolm Barrass.
Thursday 26 th March 2015. ‘

My Story – Steve Turner, Campaigner for safer healthcare

Steve Turner is a man on a mission – to create a better climate within our National Health Service where people can speak out about unsafe practices without fear of losing their jobs.

He’s a rare breed of health professional whose career spans hands-on nursing, training and innovation as well as campaigning for greater transparency within the NHS.

Steve began his career as a nurse specialising in mental health inspired by, and slightly scared of what happened to his grandfather who had suffered major depression all his life.
His appetite for learning took him through a degree in Social Policy and then into the world of healthcare IT. Steve spent the next decade working on clinical systems for American giant Shared Medical Systems, progressing from project manager to Senior Strategic Services Consultant of the US arm of the company, working with leaders of clinical teams in the UK

Steve then returned to the NHS, successfully revamping the Information and Technology department at Tunbridge Wells prior to a trust merger.

A spell in consultancy for the Kent and Medway Cancer network followed, with Steve leading two multi-organisational projects to identify the most effective information and prescribings systems . These brought clinical teams together to manage a complicated buying system in a much more efficient and cost effective way.

Then came a career crossroads. Steve and his partner decided it was time for a lifestyle change. They had enjoyed many holidays in Cornwall and decided this was the place to be. Plus Steve wanted to return his first love of hands-on nursing. He did a Return to Practice Nursing course and began work as a community mental health nurse in St Austell. Then he moved to an assertive outreach team based in Truro and dealing with some of the most vulnerable people in the community. This involved long term relationships and building trust with patients, something Steve much enjoyed. He also became a Nurse Prescriber, specialising in drugs within the mental health framework.

However in 2008, with proposed cutbacks on the horizon, Steve gently told his patients about the changes and that he might not necessarily be their regular nurse in the future, a step he thought was an important part of good care planning.

Following the standard procedures, he raised his concerns with the Cornwall Partnership NHS Foundation Trust. His only mistake was to copy his grievance letter to three GPs with whom he’d been working closely.

An attempt was made to discipline him but he accepted that what he had done was outside the policy of the Trust.

However the matter didn’t end there. The cuts had particularly upset two of Steve’s patients who realised that their continuity of care was being threatened and so they filed formal comments about the changes. But once these forms reached the desks of senior management, Steve was accused of bringing the organization into disrepute and suspended from work. Realising that the Trust would be pressing on with the cutbacks, and that his hopes of eventually winning a senior clinical job were scuppered, he resigned.

Steve returned to his training skills, developing medicines management training for staff at the Trust and worked on some major projects involving clinical governance and prescribing for patients with substance issues.

However by 2013 he was becoming increasingly concerned at the plight of the mental health staff he was training. They were becoming tearful in training sessions and were clearly stressed. They told Steve they were afraid to speak out for fear of victimisation as there was no alternative employer within travelling distance.

Steve attempted to discuss his concerns with the Trust but he quickly hit a brick wall. The Care Quality Commission were more sympathetic and arranged for an external person to review his complaint. However he was shocked to be left out of the loop, and merely told there had been ‘ recommendations.’

This process cemented Steve’s ambition to campaign for better transparency in the NHS. He decided to set up Care Right Now as a structured company with an ethical base, delivering change management consultancy within health care, and a new breed of patient led education for clinical staff.

He has also created a movement to bring together people who raise concerns about patient safety and share their experiences, with Turn Up the Volume! on Patient Safety, a new initiative run on a charity basis. With a highly successful inaugural conference in Bristol under its belt, the movement is swiftly gathering momentum.

Does he have any regrets about what he did?

None at all, Steve says he would do it all over again. But he admits it took its toll on his personal life, taking him to the verge of bankruptcy, affecting his home life and linked to episodes of major depression.

It takes more than just courage to report concerns about patient safety, as Steve Turner discovered firsthand. Now he wants to make that path smoother for others in the future.

When NHS staff can report concerns without fear, he says, we will have achieved what we have set out to do. Ultimately this about patients’ lives – and staff’s.